A nice, long weekend

Last week turned out to be a good week, although the weekend didn't seem as relaxing as it sometimes does.

The big event mid-week for Kate was that she lost tooth #2, at school even!

The big event mid-week for Anna was the annual IEP meeting, to monitor her progress, to set new goals, and to evaluate the overall plan for Anna's education and time at school.  Big picture ... Anna has an amazing team around her at school.  Each member is looking out for Anna's best interests with their particular specialty, but also has a good perspective on Anna as a whole person.

In terms of progress at school in the past year, Anna has come a long way, both academically as well as functionally.  She has met many of the goals set for her last year, both those requiring specific tests as well as those that are more observational in nature.  Her reading, in particular, has greatly improved, thanks in part to her ipad app that allows her to download virtually any book, make it "large print", and narrow down what she sees to only 3 lines at a time.  Of course, Anna's hard work and motivation played a big part in this progress, too.  No matter what the specific reasons, just know that Anna has made amazing progress all aspects of her reading in the last two years.

As part of the review process, it has been decided to scale back some of Anna's support at school to allow her more independence.  Sounds great.  Everyone is already looking ahead to what we can do for Anna now that will help her in the coming years.  Also great.  We are all pleased with how far Anna has come, but we all (including Anna) look to the future to see what she can work on next.

As always, we are incredibly grateful for our local school district.  The programs, the staff, the students ... we couldn't imagine anything better right now.

The other nice perk of the week was that the girls has little homework.  Hooray!  For Anna especially, these little breaks are nice.

Since Thursday was going to be kind of crummy outside and the girls were both off of school, I picked up a set of perler beads earlier in the week.  I don't think our kids have ever played with them at our house before!

Whenever there was a moment of down time, they were the preferred activity all weekend.  Here are just a few of Kate's creations.

Her creativity, in particular, really showed through with this basic set of colored beads.

Friday we took the kids down to Rockford to the Discovery Museum.  They all wanted to show Matt some of the fun exhibits on this field trip.

Although the trip wasn't as memorable as the one we took in August, I think the kids had a good time.

In the future, however, I will look ahead to a weekend as a whole before planning a day trip on a no-school Friday.  The rest of the weekend turned out to be busier than I expected.

Saturday we participated in a S.T.E.A.M. activity at our local library.  We created a paper castle and a few catapults out of spoons, rubber bands, and pencils.  Then we all fired marshmallows at the castle walls :)

Immediately after the library activity, the kids walked (or rode in a wheelchair) for the Halloween costume parade.  This fun local tradition drew many more participants this year because of the beautiful weather.

Sunday's activities will be reserved for a separate post.

Our Halloween evening on Monday started well, but like with many other families, it ended with some over-tired kids who were already experiencing a candy hangover.

I took the kids out for about an hour before dinner while it was still light out and the weather was warm enough that we didn't need coats.  After dinner the girls actually had homework to do.  Really?!?!  Oh, well.

Tuesday morning was a little rough on some members of the family, but we all made it out the door relatively on time.

Tuesday's highlight so far has been a picnic and nature walk at Aldo Leopold Nature Center for me and the boy.

 I've been wanting to do something like this all fall and we *finally* managed to do it.

What a beautiful day we had for our time together!

We'll take a 70 degree day in November any time!

Stay tuned for another post soon about Sunday.

Random thoughts

I wanted to get a post in before this coming weekend (you know, Halloween costumes and festivities) but it's going to include a lot of random things.  I guess that's how it goes sometimes.

Our crazy fall weather has continued.  After the wet, wet August and September, we have had some gorgeous days in October.  Even though many places in McFarland and Madison experienced a frost a week or so ago, since our neighborhood is up on a hill, we didn't.  Our broccoli, pole beans, raspberries, and a few lingering peapods are still producing, albeit slowly.  Actually, I cannot remember another fall raspberry crop like the one we've had.  It's been amazing.

The girls are looking forward to this week at school since they only have three days of school.  Many Wisconsin schools have a fall break the last weekend in October; our girls deserve this one.  These two have worked SO hard for the first six weeks of school.  I discovered this afternoon that neither girl has any real homework expectations this week because of the shortened schedule.  Hooray!  We took that extra time and headed down to the neighborhood park for some good outdoors time (although it took a bit of convincing on my part to get everyone out the door).

Backing up a day ... on Sunday after church we went to a local Madison park for a picnic and some time outside as a family to enjoy the fall weather.  Instead of going to an apple orchard or a pumpkin patch in the fall (since we can experience those things in our yard), we often have gone up to Devil's Lake as a family.  This year Matt and I decided that the experience wouldn't necessarily be worth the extra driving time, but we still wanted to do something outside together, so we tried a different park.

I think it worked out well.  The picnic lunch by a playground was great for Ethan and Kate.  After not having seen Kate play at a playground in ages, we learned that she has gotten really good at monkey bars this year.

Then we let Ethan ride his bike and Anna use her wheelchair for a "nature" walk on a paved trail.

Kate grumped a bit about having to walk, but I think she enjoyed herself at least a little.

Backing up another day ... on Saturday we attended the BCCN Halloween party at a local bowling alley.  The kids were all excited to wear their costumes and we had a great time bowling together.

LadyBug Girl (a.k.a. Anna) didn't use her wheelchair for this experience.  The walker and/or helping hands were enough.

The Vampire (a.k.a. Kate) decided to bowl without the ramp.  Not bad for her first try.

Batman (a.k.a. Ethan) liked to carry the bowling ball all by himself.

Although big sister was always close by to make sure he was safe :)

And finally, I have been trying to write down some of the things Ethan says these days.  This boy is hilarious, and he asks questions ALL THE TIME.  Here is a sampling:

Ethan: "When you get older, does your name change?"
Me: "Not usually.  What would you change your name to?"
Ethan: "North South East West"

"You just stay there and sleep while I clean up." (He said this to me while I was resting in his rocking chair.)

"Cream licky boo"  (This is what Ethan would name a pet if he should ever get one.)

"Why do some cars and trucks have two mirrors on the side while others only have one?"

"Why do some cars have two exhaust pipes?"

"Can you pass that truck up there?  I want to see it."

"Mom, did you hit the throttle as we went up the hill back there?"

"Daddy, why do we turn the lights out when we sleep?"

"Is God a girl or a boy?"

"What is heaven like?"

If I remember correctly, this questioning stage will last until he gets into Kindergarten ... at least.  We're glad he's curious, but sometimes it would be nice not to have to explain everything.

Settling In

I think we have settled into a fairly good school time routine.  Of course, as soon as I say that, something will fall apart and the routine will no longer work.  But for now, it's working.

The girls are still drained enough at the end of a school day that they (especially Kate) need some space right after school. Some days the down time is individual; other days it involves listening to a story on Kate's school ipad.

Still other days the kids can be found listening to Anna read a story to her younger siblings.

I usually have to tell Kate she has to stop reading at 4 o'clock (otherwise she would read all afternoon and then be a basket case for the rest of the evening), and the kids play until dinner.  Dinner, homework, prep for the next day, and finally getting ready for bed rounds out the days.

The girls have both had a field trip or two already this year.  I was able to go along to help with Kate's class as they harvested their garden plot at the community garden.  Later in the week, Matt joined Anna on the 4th grade trip to Old World Wisconsin, mainly to be her extra legs to make all of the movements and transitions safest for Anna and easiest for school personnel.

Kate and Anna are signed up for a drawing class once a week after school on Wednesdays.  They both are enjoying the experience, but it makes for an extra drained Kate by the end of the day sometimes.  Maybe she will continue to grow into these kinds of extracurricular activities.  The girls haven't participated in any activities outside of school (besides therapy) as of yet.  We're okay with that.  Nobody is expressing strong desires to join any clubs, sports, music groups, etc. at this point.  Someday they will, but we will enjoy our relaxed afternoons while we have them.

The lack of extra committments also provides us with free time to schedule appointments (like the traumatic flu shots we had a few weeks back) as well as giving us the ability to make a stop at a park on a beautiful afternoon.

In fact, Ethan and I have been doing our best to enjoy some of these gorgeous fall days, after the exceptionally rainy August and September.  This boy and I have a grand time hanging out at a park just the two of us, or visiting friends (both his and mine).  I'm treasuring this last year of having him home all the time, without the restrictions of a pre-school, school, or nap schedule.  Although Ethan has been known to fall asleep on the way home from picking up his sisters.  Oh, well.

Ethan and Kate have both shown an interest lately in using "real" tools, such as hammers and nails.  Those two had a lovely time nailing pieces of foam together one night.

Then one Saturday recently, Kate and I worked together to make a (very amateur) stuffed kitty.  Kate likes learning these kinds of new skills, even if it's a completely new experience to understand just how much time and energy goes into making something relatively simple.

Another day recently we discovered some visitors in our back yard.  A sandhill crane pair came by a few days in a row to feed on the leftover corn cobs and grubs in the garden.  It's pretty awesome to have a field in our backyard.

Shortly after the cranes' visit, we decided to dig our sweet potatoes.  Although there wasn't a frost predicted, we wanted to get to those tubers before the mice did.  Holy cow, what a harvest we have!

We only found one mouse nest and the critters had only gotten into a handful of sweet potatoes.  Not only were there lots of potatoes, but many of the ones we dug were HUGE.  We rigged up our sweet potato curing room (a.k.a. the basement shower with a heat lamp and humidifier) and these big bad boys have been curing for more than a week.  We're all looking forward to trying out some new sweet potato recipes this winter.

I guess all that rain this summer really helped these plants along with all of the fruit trees and raspberry bushes.

Unfortunately, we have colder weather on the way so not only will we need to turn on the heat sometime soon, but our tomatoes, peapods, broccoli, pole beans, and raspberries will probably give up when we get our first real cold snap.  Also unfortunately, we have our second round of colds since school has begun.  Ethan, Kate, and I have been dealing with sore throats, runny noses, and yucky feelings already.  Hopefully it passes quickly and easily for the whole family unit.

Open Letter to McFarland Families - 2016

Last fall we shared an open letter with families in McFarland to give anyone interested an introduction to and update about our daughter Anna.  We received such positive feedback after sharing that post that we decided to do it again, especially as Anna's life progresses and she begins to meet different physical milestones.

This year our daughter, Anna Mischnick, is in Mr. Krueger's 4th grade class at Waubesa Intermediate School and is in the D related arts group.  She uses a wheelchair for most of her school day, but can also be seen using her walker in the hallways, during related arts classes, on the playground, or out in the community.

As Anna gets older, she may chose to live her life more privately, but for the time being she has a similar opinion to ours in that answering others' questions makes her life easier since it helps others become more comfortable around her.

We not only realize that many people who have known and interacted with Anna in the last three years like to hear how she is doing, but we also recognize that new families move into the community every year and they may have questions about Anna.

First we will share a brief summary of Anna's story and then we will address the common questions we are asked these days.


Prior to February of 2014, Anna was a happy, healthy six and a half year old.  In early February of Anna's 1st grade year, she was diagnosed with high-risk metastatic medulloblastoma, one of the more common forms of childhood brain cancer.  The tumor was located in her cerebellum, the part of the brain that controls and regulates muscle coordination, and the cancer had spread throughout her brain and the length of her spinal cord.

Anna's treatment included brain surgery to remove as much of the tumor as possible, 6 weeks of high-dose radiation therapy, and an additional 6 months of chemotherapy.  Through the nine months of Anna's treatment, she experienced several complications, both common and uncommon.  Anna completed her treatments in November of 2014.  Although her cancer is officially considered in remission, she will continue to experience many late effects of her treatments as she grows older.

The most noticeable effects of Anna's cancer and its treatments are related to her neuromuscular system.  In early May of 2014 when Anna was finally discharged from her initial 3-month hospital stay, her muscle strength and coordination was similar to that of a newborn's.  All of her muscles were affected: gross motor, fine motor, visual motor, oral motor, etc.  Her sense of balance was also back to square one.

Since Anna's treatments were completed almost two years ago, she has been working hard to regain many of the physical skills she lost.  For some, it has helped to think of Anna's recovery as similar to someone recovering from a stroke.

Up until this summer, Anna chose to use her wheelchair as her means of mobility whenever we left our home.  At home, however, she was working through the stages of physical development typical with young children.  Sitting, scooting, crawling, kneeling, standing, etc.

This past July, Anna participated in a 3 week therapy program at a local pediatric therapy center.  Through that experience, she became much more confident and skilled at using her walker.  Now she often chooses to use her walker when we are out of the house.  At school, however, she mostly uses her wheelchair so she can focus her energies on schoolwork (and friends).

Speaking of school, Anna's general thinking and cognitive abilities are as sound as they ever were, although a bit slower.  She is included in as many of the regular classroom activities as possible, but her workload is sometimes reduced to accommodate her slower pace.

We will forever be grateful to our local McFarland community and our church community for supporting our family in countless ways during our many months of crisis in 2014.  Not only were the tangible aspects of support like meals, rides, babysitting, and gardening help appreciated, but the prayers and faith support will always be treasured.

Listed below are some of the more common questions we are asked and our typical answers.

What's wrong with her?  Or why is she in a wheelchair?
Anna's cancer and its treatments were focused on the part of her brain that makes her muscles move.  She has had to relearn how to use her muscles again, just like a baby has to learn how to use their muscles.  Wherever Anna is, we have to decide on the safest and most appropriate way for her to move.  At school, using her wheelchair is often fastest and easiest.

Why did Anna get cancer?  Or what caused Anna's cancer?
That's the million dollar question, isn't it?  I can't tell you was caused it, but I can tell you what DIDN'T cause it.  Anna did not get cancer because of anything she did, or didn't do, because of food she ate, or didn't eat, because she caught it from someone/something, or because of family history.  At this time, there are very few known carcinogens for most forms of childhood cancer.  Most of the kids who have cancer fall under the category of "cause unknown".

What's that (in reference to her walker)?
The blue contraption Anna often has with her is a reverse pediatric rehabilitation walker.  Although the color is cool, Anna didn't choose it.  With this brand, different sizes come in different colors.  Unlike adult walkers, pediatric walkers are often ones that kids pull behind them instead of push in front of them.  I won't go into all of the therapy reasons for this, but just know there are many :)  In general, walkers help keep people safe who have a poor sense of balance.

Why doesn't Anna use her walker all the time?
At this time, it takes a lot of work and energy for Anna to use her walker.  In order to have enough mental energy to learn and socialize at school, Anna has chosen to only use her walker for part of her day.  In addition, Anna walks more slowly in a walker than most 4th graders walk.  It wouldn't make sense for her to use it all the time at school.  And finally, the walker is awkward to use in small spaces.  Anna would probably run into too many people and things if she were to use her walker in the classroom :)

Why does Anna sometimes have black tape on the backs of her legs?
It's kinesiotape and all the cool athletes are using it :)  Just kidding.  It actually IS kinesiotape and it has a real purpose for Anna's rehab therapy.  The tape provides some of her leg muscles with a gentle reminder of how they are supposed to be working.

Why isn't Anna in school on Monday mornings?
This school year Anna starts her week with two hours of therapy at a local pediatric therapy center.

What's that (in reference to her g-tube)?
It's a tube that goes directly into Anna's stomach.  Anna's cancer and it's treatments affected her ability to chew and swallow food.  For almost two years, Anna wasn't able to eat anything through her mouth so all of her water and nutrition went directly into her stomach through a g-tube.  At this point, Anna can eat some food orally, but she still needs to have the majority of her water and nutrition go through her g-tube.

Why is Anna so short?  (Okay, it's not that obvious yet, but it won't be long until Anna's sister Kate, who is two years younger than Anna, is the taller of the two.)
Any kid who goes through chemo treatments stops growing for a short time.  Their body is working too hard at getting better to bother spending energy on growing.  Some kids who have radiation to their brain experience a side effect in which their bodies can't make enough of the chemical that makes them grow.  This may or may not be the case with Anna.  We will just have to wait and see.

What's with Anna's hair?
Anna lost all of her hair, eyelashes, and eyebrows due to her treatments.  Everything started growing back very slowly in 2015.  However, the intensity of the radiation treatments damaged the parts of her skin that make hair.  In the area where Anna received the most radiation (the back of the skull), her hair is very, very thin.  Most of Anna's classmates have probably seen her main scar back there, too.  The rest of Anna's hair was damaged similar to that of someone who colors their hair a few too many times.  Anna gets to use special shampoo to help get her hair back to the shape of a typical 4th grader.

So how are you guys (in reference to the family as a whole)?
Good.  We have had a few years to adjust to this new normal, and we have figured out how to live life and have fun doing it.  We take vacations, we visit family, we hang out at home.  We just do things at a bit of a different pace than other families who have kids the same ages as ours.

And finally, is there anything I can do to help?
Good question.  Our family is in a pretty good place right now and we are managing life fairly well.  However, lots of other families dealing with childhood cancer are not.  The Badger Childhood Cancer Network is an organization that helps families who are dealing with or have dealt with a childhood cancer diagnosis.  (We actually know of a few kids who have chosen to accept donations for this organization instead of receiving gifts at a birthday party; what a great idea!)  If donating money is not your cup of tea, check out the recent post on this blog titled The STAR Act.  It provides ways to contact your local congressional leaders regarding a bill currently in Congress that provides some much needed funding and representation for childhood cancer patients and survivors.

Thank you for taking the time to read and understand Anna a little bit better.  Please let us know if you have ever have other questions.  We've learned a lot in the last few years and we don't mind sharing it, if it helps others feel more comfortable around Anna.

One thing needful

"But one thing is needful: and Mary has chosen that good part, which shall not be taken away from her."  Luke 10:42

Early in the summer, one of the sermons at our church was on the story of Mary and Martha.  Since that time, "one thing needful" has been on my mind.

One of the things I love about hearing/reading Bible stories again and again is how different parts have different meanings at different times in my life.  I don't know how many times I have heard the story of Mary and Martha, but this summer I listened to it with different ears.

In the midst of therapy goals, educational goals, social goals, medical goals, etc., one thing is truly needful in the life of our daughter.  In fact, only one thing is truly needful in the lives of all three of our children and in our lives as adults ... that we love Jesus and trust Him for our salvation.

Whether or not Anna walks independently, or eats completely orally, or learns as her peers learn, or has her own group of friends, one thing is needful.

Whether or not our children "succeed" in life as the world defines success, one thing is needful.

This summer when I would get overwhelmed with the work of coordinating the medical needs, the therapy needs, the educational needs, Anna would often pipe up in the background by singing along with a song on the Christian radio station.  It was always a good reminder that one thing is needful.

We are glad, of course, with all of the progress and goals met by Anna, Kate, and Ethan, but keeping "one thing needful" in mind, we have a certain peace about the rest of life.  Of that we are thankful.

Updates

Time for a few individual updates.

Ethan:
Mr. Almost Four is so much fun (and sometimes challenging).  He still brightens up the day of most adults he sees.  His little comments and goofy faces are the best.  It's hard to be grumpy when Ethan's around.  (Unless, of course, he's grumpy.)  Here are a few of his more memorable phrases lately.  I need to do a better job of writing them down because I know there are more and better ones, but this is all I've got right now.

"I want our whole family home."
"I'm a fast healer."
"Like a million big?"
"Is there school today?  No?  Then I can play with Kate!  Yay for Kate!"
"Unbleed!" (This is how you make a cut stop bleeding.)
"I love you all the way to China and to the whole university and to Pluto and back."  (We think he means universe instead of university :)

Ethan enjoyed making applesauce with me all canning season.  He turned the handle on the squeezo strainer just about every time; I think he liked the mechanical aspects of it.

Mr. Ethan also learned how to ride a bike without training wheels this week.  Seriously?!?  Who would have thought one of our children would hit this milestone so early?  I guess having daily access to pediatric therapy equipment helps your vestibular system develop a bit ahead of what is typical.

About a week ago, Kate pulled out our cheap version of a balance bike (a.k.a. a garage sale 12 inch bike with the pedals removed).  Ethan took to that pretty well until the weekend when he came down with his first major cold in awhile.  Then on Tuesday while Kate was home sick with the same virus, we took the training wheels off of his "real" bike and tried it out.  After only a half hour or so, he figured it out.  By the end of the day, this is what he looked like:

Hmmm ... I'm a little uncertain about what is in this 3-year-old's future, but right now he is SO proud of himself.  (After a little digging, we found this awesome article online that mirrors Ethan's experiences almost exactly.  Check it out if you have a chance! How I Didn’t Teach My Three-Year-Old Son to Ride His Bike Without Training Wheels)

Kate:
She's doing great, in spite of being home sick with a cold today.  She's shining at school, or at least we think she is at this point.  She seems to have hit her stride with how to manage the "drawing inside the lines" aspects of school, which can be challenging for our free spirited daughter.

Yesterday after school we had an incredible thunderstorm complete with hail and torrential downpours.  After the skies cleared up and we all checked out the rainbow, Kate discovered the ditch in the front yard; it only ever fills with water during crazy rainstorms.  I couldn't get her back inside until Matt came home ... too much fun to be had splashing, exploring, and sending sticks through the culverts.

The water was probably 1-2 feet deep and 3-4 feet wide during the storm, but it had trickled down to this by the time I grabbed a camera to take any pictures.

McFarland hosted its annual Family Festival this past weekend.  Since Ethan and I were feeling under the weather on Saturday, Matt took the girls to some shows and then the rides.  They all had fun watching the dancers and listening to the band, and Kate discovered that she really likes carnival rides.  Kate found a couple of friends from school and apparently they had a blast riding rides together for awhile.

Anna:
Anna seems to have settled into the school routine.  After a couple of weeks to adjust and "get her school mojo back" (in the words of her awesome aide), things are running smoothly.  Anna is excited to be reading and filling out her reading log (independently, for the most part, this year!), would rather do math than anything else, and seems pretty happy about school in general.  And, Anna has a great team around her (AGAIN!) this year.  Big sigh of relief.

Anna was looking forward to the parade on Sunday that is a highlight of the McFarland Family Festival.  When she was in preK, she walked the parade route with her preschool, waving and smiling the whole way.  This year, she plopped herself on a curb and smiled and waved at every person she recognized (which was quite a few).  Then she suggested that the kids make candy creations with the HUGE bag of candy they collected from the parade.

It was really an insane amount of candy.

But the candy creations kept everyone occupied for a good portion of the afternoon, and we still have a lot of candy left over for more candy creations when the weather turns colder :)

Mom:
The harvest is almost done.  I finished up with most of the apples this past weekend and started cleaning out the garden.  Although the wet weather these last few months took its toll on our tomatoes and squashes, it boosted our fruit harvest.  The grapes, pears, and apples were all excellent harvests and our fall raspberries have been plentiful (as long as I keep ahead of the fruit flies).  This year we planted a second crop of broccoli and pea pods.  These, along with our lingering green beans and pole beans, have kept us supplied with fresh green vegetables this September.

This photo doesn't include the frozen food, or the 7 quarts of applesauce I canned today, or any of our pumpkins, potatoes, sweet potatoes, onions, or garlic, or any of the pears on our late-harvest tree.  Each of the jars shown has two lined up behind it.  I think this should last us awhile, but by next June each of those jars will probably be empty.

Dad:
Work has been busy, but Matt has been able to keep biking to work a few days a week in addition to mountain biking one evening each week.  He has also started taking his fall Fridays off.  So far those Fridays have included a lot of harvesting work and other household type things.  Maybe he'll get to tackle some of his other projects one of these days.

Let's hope that our healthy summer keeps our immune systems up as we are exposed to more and more yucky germs.  This cold was rough when people were in the thick of it, but it passed through very quickly for a cold.

The STAR Act

In case you are looking for a positive way to influence your congressional leaders this election season, please keep reading.

The STAR act, a bill outlining support and funding for people affected by childhood cancer, is in committee in Congress right now.

Here's how the language of the bill begins:

"Approximately 1 in 285 children in the United States will be diagnosed with cancer before their 20th birthday.
 

In 1960, only 4 percent of children with cancer survived more than 5 years, but today, cure rates have increased to over 80 percent for children and adolescents under age 20.

By 2020, the population of childhood cancers survivors is expected to be 500,000 individuals.

As many as two-thirds of childhood cancer survivors are likely to experience at least one late effect of treatment, with as many as one-fourth experiencing a late effect that is serious or life-threatening.

As a result of disparities in the delivery of cancer care, minority, low-income, and other medically underserved children are more likely to be diagnosed with late stage disease, experience poorer treatment outcomes, have shorter survival time with less quality of life, and experience a substantially greater likelihood of cancer death."

These are only a few of the 15 findings listed in the beginning section of the STAR act, currently "on hold" in Congress.

Many families impacted by childhood cancer could recite these facts and more from memory (such as childhood cancer research receives less than 1% of government funding from the NCI and less than 4% from the NIH). These families could also give personal stories from the heart that go beyond the facts and figures.  Leaders in the children's oncology community across the board have given their input and ultimately their support for the STAR act.

S stands for Survivorship.  Those half-million survivors are going to need systematic follow-up care throughout their lifetime.

T stands for Treatment.  Although many of the "common" childhood cancers have high cure rates, many more do not, especially if the cancer is rare.

A stands for Access.  We were lucky with how quickly and easily Anna received intense medical treatments.  Many kids are not so lucky.

R stands for Research.  "Virtually all progress against cancer—in both children and adults—has been founded in basic research, often in areas not directly related to the disease ... Pharmaceutical companies have been reluctant to develop drugs appropriate for children with cancer because it requires making an investment in products that are unlikely to cover the high costs associated with their research, development, marketing, and distribution." (Again, from the first section of the STAR act.)

All of the leading children's oncology groups are backing this bill.  It has received plenty of bipartisan support.  You can even access the exact language of the bill using the above link.  It's pretty wordy, but it includes such ideas as including a pediatric oncologist on national oncology committees.  Sounds like a good cause, right?

But ... it was introduced 15 months ago.  And it's stalled again in the House Energy and Commerce Committee.  Because, in an election year, it's not a priority.

YOU can help make it a priority.

Start by checking out this map.

1. A gold star means, you should say “Thank You!”  Your Rep is already a co-sponsor.  (Dane County folks ... Mark Pocan is already a co-sponsor.)
2. A black telephone means you should reach out (call, email, and tweet) and invite your Rep to sign on.
3. A red telephone means your Rep is on the E&C Committee and hasn’t yet signed on.  These are important targets!

If you want to send a form letter through the mail, you can visit this site.

If you'd rather send an email, you can visit this site.  You simply put in your zip code and, viola, the email is already drafted and ready to send to your representative.

If you choose this route, remember to cross check whether or not your rep is already a sponsor.  If they are, you should probably change the language to say "Thank you for your co-sponsorship of the Childhood Cancer STAR Act" :)

Feel free to include the following paragraphs in the section that looks like this: "[[[[[Please include your story of why you have gotten involved in childhood cancer and why it matters to you that they co-sponsor this bill.]]]]]"

"A young girl who I know was diagnosed with high-risk metastatic medulloblastoma when she was 6 1/2.  She underwent brain surgery, six weeks of total head and spine radiation, and 6 cycles of high-dose chemotherapy.  At almost two years out of treatment, her cancer is considered in remission.

By some data measuring tools, she is considered one of the lucky ones.  Although she was diagnosed late in the game, her cancer was considered fairly common and she had easy access to receive excellent medical treatments.

However, she will continue to experience multiple late-effects, both physical and cognitive, due to her treatments.  Her childhood was taken from her at a very young age.  Through the passage of the STAR Act, her opportunities in the future will look better and brighter because of the research and follow-up care included in the bill.

No child should ever experience any type of cancer.  But, for those that do, they should not be asked to fight this battle alone."

Thanks for whatever help you are willing to give!